SULLIVAN: It may not be 'normal' but it's my life

As a GateHouse columnist in Fall River, I’m devoting sweat and tears to this Autism Around Us series (nope, no blood — but it’s early yet). As a mom, the series is important to me personally, too: I have an autistic son named Conor.

As a GateHouse columnist in Fall River, I’m devoting sweat and tears to this Autism Around Us series (nope, no blood — but it’s early yet). As a mom, the series is important to me personally, too: I have an autistic son named Conor.

One child in every 88 will be diagnosed. You will know someone with autism, if you don’t already. Our aim with this series is to raise awareness — let you know what it’s like to live with this disorder, let you know what services are available, let you know how you can help and even introduce you to some people with autism. And we will spread these stories across all sections of the newspaper, because autism touches nearly every aspect of life: health, education, arts and entertainment, lifestyle, religion and more.

Conor was diagnosed with autism at age 2 years 8 months. It wasn’t a surprise when I heard the doctor say the word “autism” — I had known something was very wrong from the time he was 13 or 14 months — but there was of course that moment when we left her office and I crumpled. It was then that I realized my life was going to be very different than I had pictured.

It’s hard to think back to those dark days. I was having panic attacks, chest pains, insomnia. My child was healthy, crawling at 6 months, walking at 10 months, giggling at tickles, smiling when he saw Grammy or Auntie Judy, waving bye-bye, clapping. He even had a few words: “Dada,” “hot-hot,” “all gone.”

But he didn’t sit still. He didn’t play with toys. He was often inconsolable. He liked to play in the dirt, but just pushed it around. He waved sticks in the air. Sometimes it seemed like he couldn’t hear me — we even had a special hearing test done.

When Early Intervention finally came in, I was relieved, not devastated. Finally, someone believed me that there was something wrong. And when the doctor gave us the diagnosis, it was “go time” — now we could buckle down and get him the help he needed. We changed his diet, we poked and prodded, we shoveled vitamins into him every day, we read every book we could find, we hooked him up to electrodes for “neurofeedback” therapy — we tried very nearly everything we could. We would have him “cured” within a few years — we were certain of it!

No such luck. Conor turns 10 in May. He often wakes up at 3 a.m. and refuses to go back to bed. He can scream louder than anyone else I’ve met. He has a tendency to flop on the ground at Target. And if a waitress is slow with our order, look out!

Page 2 of 3 -
Still, he brings us so much joy. I hope no one ever feels sorry for me, or for him. He is happy as can be, albeit in his own little world. When he wants my attention, he puts his face right up to mine, his big eyes wide with anticipation. He has a giggle that can make even the biggest sourpuss laugh. He still loves tickles — in fact that’s the best way to get words out of him — and he loves a good game of chase with Daddy.

He adores his sister — she is the first person he goes to when he needs consoling and he loves to jump in her bed in the morning to wake her up. He tolerates his brother, but what could be more normal, right? His baby cousins crack him up. And no one — absolutely no one — makes him happier than Grammy and Papa.

He swims like a fish, he dribbles a basketball like a Harlem Globetrotter, he sings Lady Gaga and Katy Perry and Pitbull with perfect pitch. He’ll stay mum while the rest of the congregation is singing at church, then burst out in song when everyone is quiet. And this child was easily navigating his iPad within minutes of opening the box on Christmas morning.

He doesn’t say much, but at least he doesn’t give me any backtalk like his siblings. He’s never mean, he never hurts anyone’s feelings — and likely never will.

And Conor has the ability to bring out the best in everyone he meets. My friend Laura had no experience teaching children with autism and yet she decided one day to teach a special needs Sunday school class. It sounded fine to me — if anything it freed me up for an hour on Sunday to work on the church food pantry. Conor loves Laura, and despite her lack of training, she gets him to paint, sculpt with clay and last week, Conor completed Laura’s biggest lesson: He recited a Bible verse they’d been working on memorizing for months.

My daughter asked me the other day what I thought our life would be like if Conor was “normal.”

You know what? It’s not worth thinking about. He’s not “normal.” This is our life. But he’s come so far in such a short time, and we have to keep focusing on the little steps forward that he makes.

Will he marry? Not likely. Will he have a job? I like to think he will do something productive (watch out Bobby Flay — Conor loves to help me cook, so he may be the next Iron Chef). Will he live on his own? Well, let’s just say that if he does it will be with a lot of helpers involved.

Page 3 of 3 -
Was I crushed when I had to face facts that these dreams were not going to come true? Heck yeah! But these were my dreams, not his.

I don’t look at autism as a curse. Put it this way: God thought Greg and I could handle this — we must be pretty special to deserve a Conor in our lives. And I know my other two kids miss out on some things (we can’t just go out to dinner on a whim — it requires much planning, and a solid escape plan if things go south — and we’ve only been to a movie theater once as a family, and that was just this past January). But they are growing up to be very compassionate, understanding, open-minded little people.

And I’ve watched our family members step up to the plate in ways that bring tears to my eyes. Sure Greg and I need more help than parents of typical children, but my parents and our siblings are always there to pitch in (we’ve been known to put out a call for baby sitters only to have a team of five or six show up to help).

The best advice I can give to parents who are just starting this journey is this: Let yourself have a good cry — get it all out. Then read books, do research online, find other parents to talk to. Arm yourself with information. Accept help when it’s offered — there’s no shame in admitting you are not Superman or Wonder Woman.

But along the way, be sure to enjoy being a parent. Recognize the funny moments. Work willingly and diligently with the people who are helping your child.

But above all, just know that it gets better.

You’ll see.

Lynne Sullivan is the entertainment and special sections editor for The Herald News. She and her husband, Greg, a sportswriter, live in Somerset with their three children, Kathryn, 11, Conor, 9, and Ian, 7.